Samantha Faden & Dr Jenifer Cullen: Successfully adjusting OCD therapy for autistic clients (#503)

Summary

Podcast Summary: The OCD Stories – Episode 503

Title: Samantha Faden & Dr. Jenifer Cullen: Successfully Adjusting OCD Therapy for Autistic Clients
Host: Stuart Ralph
Guests: Samantha Faden (autistic, lived experience with OCD) & Dr. Jenifer Cullen (clinical psychologist, McLean OCD Institute)
Date: September 14, 2025

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Episode Overview

In this insightful episode, host Stuart Ralph welcomes Samantha Faden and Dr. Jenifer Cullen to discuss their therapeutic relationship and the nuanced adjustments needed when providing OCD therapy to autistic clients. Drawing from their five-year client-therapist relationship, Sam and Jen candidly discuss their shared journey, detailing successes, mistakes, and discoveries. This conversation is highly relevant for OCD clinicians, autistic individuals navigating mental health support, and anyone interested in advancing neurodiversity-informed therapeutic practice.

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Major Discussion Points & Insights

1. Introductions & Relationship Background ([03:09–04:38])

• Sam describes herself as Jen’s “favorite patient, client, whatever you want to call me,” noting her dual experience with OCD and autism, and experience working with autistic populations herself.
• Dr. Cullen shares her extensive background (close to 30 years) specializing in OCD and OCD-spectrum disorders.
• The two have worked together for over five years, creating a collaborative dynamic rooted in honesty and adaptability.

2. Sam’s Therapy Journey: From Hair-Pulling to Diagnosis ([04:48–06:39])

• Sam originally sought therapy for trichotillomania (hair-pulling).
• Neither Sam nor previous clinicians recognized her OCD or autism until Jen did.
• Their work shifted dramatically upon realizing the overlap of autism and OCD; they focused on life engagement and functional, not just symptomatic, therapy.

3. Differentiating OCD and Autism Behaviors ([08:24–11:28])

• Dr. Cullen explains:

  “I’ll look at the function of a behavior, and if it is fear-based, then that’s sort of easier to tell us that it’s probably related to OCD. If not…and it’s to regulate sensory sensations…then we know it’s related to autism.” (Dr. Cullen, [08:26])

• Sam emphasizes the importance of identifying whether an intervention is functional for life engagement or just “an exposure for no good reason.”
• Therapy required active “pulling apart” of what is truly OCD-driven vs. autistic processing.

4. Learning from Mistakes: Therapy “Rupture and Repair” ([11:28–13:11])

• Dr. Cullen shares a key mistake: treating Sam’s sensory comfort objects (her blanket) as exposure targets when they were vital for regulation.
• Sam recalls the incident with humor now, noting she is “no filter” with Jen, demonstrating deep trust and real-world repair.
• The pair highlight that rupture and honest conversation actually strengthened their alliance.

5. Adjusting ERP for Autistic Clients

a. Sensory Overload Planning ([14:34–18:18])

• Jen explains the necessity of a “sensory overload plan” before starting ERP:

  “There’s no new learning that occurs when an autistic client is completely sensory overloaded...and we want new learning to occur during ERP.” (Dr. Cullen, [17:32])

• Breaks and grounding/self-stim (“stimming”) are encouraged, unlike standard ERP.
• Sensory tools/objects (e.g., hats, headphones) are not automatically “compulsions”—they may be vital regulation tools.

b. Concrete, Predictable Structure ([25:31–28:22])

• Traditional unpredictable, mixed-mode ERP is often counterproductive; predictability and stepwise progression are emphasized.
• Jen: “We’re setting up ERP to be autistic. Right. So we’re introducing more predictability.”
• Shorter, more frequent sessions recommended if sensory load is reached.

c. Tailoring Measurement & Motivation ([21:07–24:23])

• Standard scales (e.g., SUDS 0-100) felt abstract; Sam co-created her own rating system tied to her special interests (aircraft, numbers).
• Involving special interests (e.g., JetBlue) improved buy-in and engagement.
• Therapy linked to Sam’s values/interests (“special interest-based exposure”).

d. Negotiation & Buy-In ([28:22–31:13])

• Sam and Jen developed collaborative, numerical negotiation for reducing compulsions (“as many as this, then fewer next time”).
• Sam notes: “My voice feels more heard...I have enough knowledge and progress that I can make a fair plan.”

6. Language and Identity: Moving Beyond the Medical Model ([33:08–36:47])

• Shift from “person with autism” to “autistic person/client”—recognizing autism as an integral, not pathological, identity.
• Critique of “functioning labels” (high/low) as oversimplifying and misleading.
• Rejecting deficit-based metaphors (“the puzzle piece”, “exploding brain”): “Autistic individuals don’t want to be this puzzle that we non-autistics have to solve.” (Dr. Cullen, [35:42])

7. Motivation, Hope, and Words of Encouragement ([38:47–45:40])

• Sam credits feeling heard and constructive feedback (“show me what you did, you lived to tell!”) as motivating.
• Jen emphasizes the effectiveness and increasing spread of these tailored approaches:

  “Changing up the way we do ERP with our autistic clients, it works. It really works.” (Dr. Cullen, [44:08])

• Sam offers honest hope: “There is a place that can be safe and encouraging to engage in treatment, especially when you’re in this place that feels like nobody understands you...and it’s getting bigger.” ([45:30])

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Notable Quotes & Memorable Moments

• On learning from clients:

  “I’ve learned more from Sam and my other autistic clients than any book I could have ever read.”
  — Dr. Jen Cullen ([06:39])

• On honesty in therapy:

  “I have no filter when it comes to [Jen] at this point.”
  — Sam ([13:35])

• On ERP adaptation:

  “We’re setting up ERP to be autistic.”
  — Dr. Jen Cullen ([25:39])

• On the value of repair:

  “All that matters is can you repair it? And the fact that you guys are here doing a podcast shows that actually, you repaired it.”
  — Stuart Ralph ([13:01])

• On shifting language:

  “We really want to start to see the autistic client as somebody with neurodiverse tendencies instead of...a disorder where we need to do treatment on their symptoms.”
  — Dr. Jen Cullen ([35:55])

• On hope and progress:

  “There is a place that can be safe and really encouraging to engage in treatment...I just think that there is a place we can fit in and it’s getting bigger and more inclusive and welcoming.”
  — Sam ([45:39])

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Key Timestamps

• Introductions & Therapy Background: 03:09–04:38
• Diagnosis Journey: 04:48–06:39
• OCD vs. Autism Behaviors: 08:24–11:28
• Rupture and Repair Example: 11:28–13:11
• Adjusting ERP: Sensory & Structure: 14:34–18:18, 25:31–28:22
• Customizing Scales via Special Interests: 21:07–24:23
• Negotiation & Buy-In: 28:22–31:13
• Language & Identity: 33:08–36:47
• Motivation & Words of Hope: 38:47–45:40

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Takeaways for Clinicians & Clients

• Be collaborative: Let autistic clients co-author their exposure plans, including sensory needs and special interests.
• Be concrete and structured: Abstract concepts and unpredictable therapy can trigger disengagement.
• Practice rupture and repair: Honest mistakes can lead to stronger therapeutic alliances when openly discussed.
• Shift language and assumptions: Uphold neurodiversity, avoid deficit models, and use preferred identifiers.
• Therapy works when it fits: Tailored approaches are not only more humane but also more effective and sustainable.

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For Further Listening:

Check out more episodes from The OCD Stories and read or listen to more about ERP, autism, and neurodiversity-affirming care.

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This summary was created to provide an in-depth, accessible synthesis of the episode’s major themes, discussions, and actionable insights for the OCD, autism, and clinical community.

Transcript

[A]

You're listening to the OCD Stories podcast hosted by me, Stuart Ralph. The OCD Stories is a podcast dedicated to raising awareness and understanding around obsessive compulsive symptoms. I do this for interviewing inspired therapists, psychologists and people who have experienced OCD. Welcome to the OCD stories and welcome.

[B]

To episode 503 of the podcast. And in this one I chat with Samantha Faden and Jennifer Cullen. Samantha is autistic and has lived experience with OCD. Sam is the client of Jennifer Dr. Cullen. So Dr. Cullen is a licensed clinical psychologist at the McLean OCD Institute. So Sam and Jen came to me, they had this great idea of sharing their work and how they've adjusted therapy for Sam and they wanted to do this to help any other autistic clients out there or therapists working with autistic clients to help tailor OCD therapy much better. So I appreciate them both for their time. And in this episode we discuss their therapy relationship as therapist and client. How Sam's therapy journey has gone, what worked, how they learned together over time. Getting an autism diagnosis, working out together where autism and OCD start and end and overlap Trichotillomania Adjusting exposure response prevention therapy for autistic clients Rupture and repair in the therapeutic relationship, Adjusting for sensory sensitivities in erp Having a sensory overload plan Rating anxiety during exposures through special interests, changing the pace of therapy, having more structure and clarity, changing the language used around autism, motivation in therapy and much more.

[A]

More and thanks to our podcast partners. Nocd. If OCD is interfering with your life, NOCD can help. They're licensed therapists, specialise in exposure and response prevention therapy. The most proven therapy for OCD with NOCD, effective treatment that is 100% virtual, is available for children and adults with OCD and most members can get started within seven days on average. No hassle, just real science backed help and support between sessions. Begin your [e-mail] or I'll put the link in the episode description.

[B]

So thank you so much to Sam for coming on and sharing her story, her therapy journey. It was a pleasure having her on the podcast and also to Jen, obviously for her expertise and clinical experience and it was great to see how the two of them interact and this whole therapeutic relationship they've built together. So thank you to both of you guys and thank you to everyone listening. I deeply appreciate it. And without further ado, here is Sam and Jen. Welcome to the podcast, Jen and Sam. Hi, it's good to have you here. So I guess initially just Intro who you both are and your relationship to each other. Sure.

[C]

Sam, you want to start?

[D]

Sure. I'm Sam. I'm Jen's favorite patient, client, whatever you want to call me. Even though she might not admit that I am someone who has ocd and I'm also autistic. And I've been seeing Jen for five years now, plus at this point. And we've done a lot of work together on many things.

[C]

Yes, we have.

[D]

I also work with the autistic population, so it's an interesting kind of like, intersection there.

[B]

Yeah, absolutely. Yeah. Thank you for introducing yourself and Jen.

[C]

Yeah. So My name is Dr. Jen Cullen. I'm a staff psychologist here at the OCD Institute at McLean Hospital in Belmont, Mass. Been here. I always date myself when I say that, but I started here in 2001 as opposed to.

[D]

I was three years old.

[C]

And. Yeah, yeah. So here we are. Still. Still here, the private practice. And then I also do some online training with the BTTI for the iocdf. So I've been treating OCD and OCD spectrum disorders now for upwards of close to 30 years.

[B]

Yeah. So brilliant. Thank you. Wealth of experience. So, Sam, how has the. The work with Jen changed over time, do you think?

[D]

So when I met Jen, I came to Jen. It's actually hilarious. I'm on camera with no hat on. I came to Jen because I had ripped all of my hair out and my mom told me to find a therapist. So naturally I found the one with the most hair. And I was. It was just like right before, like 11 days before the pandemic shut everything down. And I saw her and was like, everything's fine. And then the next time I had seen her, right before the world shut down, she was like, no one has ever said you might have ocd. And I was like, well, people used to joke that, like, I caught it contagiously from, like, my friend's mom, but, like, it's actually wasn't funny because. Or it was never funny to me. And then as things like progressed, let's go to residential. Three years later. Two, three, whatever. Years later. One day, it was a Friday at like 4pm, holiday weekend, she wanted to leave. And I'm like, do you think I'm autistic? And she goes, we are not discussing this right now. And I was like, there's my answer. But I always have thought that I've had characteristics of. That my twin brother is autistic. So I guess the math kind of maths there.

[B]

Yeah.

[D]

But we really had to shift our gears when we had. It came down to, like, differentiating what's going to help me engage in life versus what's going to be like, what's not helpful to be doing as, like, an exposure or what might be, like, painful sensori.

[C]

Yeah, it was interesting because Sam came to me to get treatment for trichotillomania. Nobody had ever told Sam that she was autistic or even that she had ocd, and that was very, very surprising to me. What I will say is that I've learned more about autism and how to change things up a bit when you're doing ERP with an autistic client. I've learned more from Sam and my other autistic clients than any book I could have ever read. Training, you name it. It really is the autistic individuals who have taught me what it's like to live in the world, and it is quite different.

[B]

That's awesome. And yeah, we learn so much from our clients. Right. And Sam, I can see that. Correct me if I'm wrong, but the therapy for trichotillomania has worked because you've got a good head of hair.

[D]

Apparently so. And Jen commented on it earlier and I was like, we don't comment on appearance, so sorry. No, it's totally fine. I'm not saying that to you. It's only.

[B]

Yeah, okay, good, good, good. I'm just jealous because I don't have a good head of hair. But mine's genetic, not triggered.

[D]

My brother's is also genetic, so I hear it.

[B]

Okay. Okay, good, good. So let's get into unpacking. Then the. The OCD work. Actually, just before that, how did the two of you, when you realized that you had autism, how you then differentiated between, say, the OCD versus something that's just part of the autism?

[D]

Do you want to go first? Yeah.

[C]

I mean, that is the million dollar question, right? That's what we always hear therapists say, like, how do I know the difference? There's so much rigidity that shows up with both OCD and autism, but it's hard to sort of tease the two apart. Oftentimes I'll look at the function of a behavior, and if it is fear based, then that's sort of easier to tell us that it's probably related to ocd. If it's not a fear based behavior, and maybe it's a behavior that's done to regulate sensory sensations in some way, then we know it's related to autism. But sometimes it's. It's very hard to know the difference. And Sam And I bumped up against that sometimes. It could be the behavior could be driven by both, you know, OCD and autistic sensory needs or whatnot that drives them out of that behavior.

[D]

And then I think that's where you have to decide to kind of like, is this going to lead me to engage in my life versus is this just, like an exposure we're doing for no good reason? Are we wasting our time here? I just remember when you sat me down after the holiday weekend, and you were like, so the answer is yes. I'm like, I already knew that one. And you're like, so we need to pull these pieces apart. And everything you said, I was like, huh? Yep, Got it. Makes sense. And it really changed our trajectory and what we did going forward, both at residential and outpatient.

[C]

Oh, go ahead.

[B]

No, no, go for it. Go for it.

[C]

I was just going to say, I mean, I tripped up all over myself in working with Sam. There were a number of ERPs that, you know, in looking back, I go, oh, I should not have been doing that kind of work with. With Sam, because at times I was putting things in the OCD category and thinking, all right, we've got to go expose you to this. Like the supermarket, for example, Sam was struggling to do any sort of grocery shopping and would go up and down each aisle in a very sort of thorough way. And so I said, all right, great. Like, let's go to the grocery store, and we're going to skip aisles and whatnot. But Sam, get into the grocery store. And it was loud and it was.

[D]

Bright, and people were, you know, under carpet. Yes.

[C]

Yeah.

[D]

Too much going on.

[C]

It was too much.

[D]

Oh, and the robot during COVID that came around to, like, take inventory. Yeah, it was great.

[C]

So, yeah, it's one of those things where you look back and you go, oh, gosh, what was I thinking? Here I was putting things in the OCD category when it's not true.

[D]

But, yeah, I just recall when you were. It was the blankie incident. My blankie fell in water. There was, like, a leak at residential, and I, like, had a whole fit over it and didn't know what to do. And so I just lash out at everyone and just melted down. And Jen's answer to that was, well, now we're going to leave blankie at home for the next two weeks. She apologized for that, but I did.

[C]

That was. That was something that brought great comfort to Sam. It was a comforting sensory experience to have her blanket here in the residence. And I thought, oh, you don't need that. I didn't know what it was really kind of bringing to her. And so I said, go drop that off at home.

[D]

But I remember sending you the picture. I'm like, look, it's here. I'm leaving it here.

[B]

So you're obviously annoyed at Jen at that point, right? I'm guessing yes.

[D]

And I will let her know that because I'm pretty. No filter when it comes to that with her at this point.

[B]

Yeah. Which is good. But I think it speaks to, you know, what you. You two have just demonstrated is the importance of rupture and repair in all relationships. But in. In the therapeutic relationship that it is okay to be annoyed at something your therapist has done. All that matters is can you repair it? And the fact that you guys are here doing a podcast shows that actually, you know, you repaired it and Jen repaired it. So, yeah.

[C]

He'S forgiven me.

[D]

She's my favorite person in the world after JetBlue, the airline.

[B]

Okay, why JetBlue a special interest.

[D]

There you go.

[B]

Yeah, yeah, yeah. Okay. Is JetBlue an American airline?

[D]

Yeah, mostly. Well, they actually expanded to. They fly to Madrid, Paris, and Amsterdam now, so.

[B]

Okay, cool. But, yeah, I have heard the name, the brand, but yeah. So obviously it's domestic rights, mainly.

[D]

Mostly domestic, yeah.

[B]

Okay, cool. So you got lots of model JetBlue planes.

[D]

Yeah, and I know every name of every plane and the tail number that's associated with it.

[B]

Wow.

[D]

But nobody knew I was autistic.

[B]

Yeah, that's pretty.

[D]

Oh, my goodness. I'm wearing my airplane necklace today.

[B]

Oh, amazing. Okay. Yeah. Oh, wow. So, yeah, awesome. Good, good. Special interest. So let's talk about ERP then. So I'm interested from both your perspectives. So Jen, obviously is the therapist. How you adapt. And then, Sam, for you, well, that's like that adaptation or how you adapt it yourself. So let's start with. Yeah, what. What Generally, what changes need to be made for someone on the spectrum to get the most out of erp?

[C]

Yeah, I can. I can jump in.

[D]

That's your part.

[C]

You know, I think one thing that's really important when you're working with an autistic client is there are going to be sensory sensitivities. We all have them. But in working in erp, we have to pay attention to, you know, we want to make sure that our client is not getting overloaded. And if people get overloaded from a sensory perspective, then a couple things happen. They either will start white knuckling their way through the exposure or just disengage altogether. It's too loud, it's too bright of 2 inches and then they'll back out. And so we want to create this sensory overload plan even before you get started. What does it look like to you when your, your senses are overloaded? And people might say things like, oh, you know, I will cover my ears or I'll start walking back and forth or engaging in some other self stimulatory behavior, doing my finger tapping for Sam at his finger tapping.

[D]

But at first that was ocd, that was counting to make sure all my fingers were there. But it turned into actually a grounding like stem that I needed to kind of reset myself to the space, which isn't interesting also.

[C]

Yeah. So, you know, we've got to get this plan in place. You know, I'll ask my autistic clients, can you tell me when you're starting to lean in that direction and when you are, let's take a break. Usually when we're dealing ERP with neurotypical clients, we say let's not take a break. Right. Because we don't want to send these messages to our brains that anxiety is dangerous or you can't handle this. So we'll say keep pushing forward. It's very different when I'm working with an autistic client, say, all right, let's take a break and let's implement that sensory overload plan. Whether that be do some sort of, some grounding, engaging in self stim, maybe going down to the end of the hall where it's dark and quiet and put your noise canceling headphones on, maybe some sunglasses just to kind of close in a little bit with the senses. And then once people regroup, then we're going to get back to work. And so to have that plan in place from the very start is really important.

[D]

I feel like the hat. It started out as I'm covering my head because I ripped all my hair out. But that was actually something. If I put that out, I could keep doing like, I could kind of keep like that was helpful in just toning down the world. That was like shining lights on me, if you will.

[C]

Because there's, there's no new learning that occurs when an autistic client is completely sensory overloaded. Right. And we want new learning to occur during ERP and so that, that just doesn't, doesn't happen. Can't happen.

[D]

I remember the one time it wasn't respected, it wasn't. You don't worry, was a coach. I was with a residential. I shut down and slept the rest of the day, which is super uncharacteristic of me. I'm super, like socially driven. And I stayed in my room and was like, everyone get away from me. And that shows, like how much the shutdown. Really?

[B]

Yeah, yeah, absolutely. Wow. So, Jim, are you going to say something else?

[C]

No, I think just having that plan in place ahead of time. And while we're sort of talking about sensory experiences, this is another way that I have tripped up. I don't know that I necessarily tripped it up with Sam, but I've worked with other people where they might say, oh, you know, I've got tags in my clothes and they're really itchy and it distracts me and I can't handle it and etc. And you know, back in the day, I might say, oh, well, you know, the person might say, I'm going to cut them out of my clothes. And no, no, no, let's keep them in the clothes. And that way we can do some ERP with that sensory experience.

[D]

Right.

[C]

And again, it's not something that we want to try to do. You can't erp sensory sensitivities out of people. There's no habituation that occurs with that. There just ends up being a level of frustration and so no longer set up those types of ERPs. The caveat here is if somebody says to me, wait, I actually do want to work on that. So I think we did this with your hat, Sam and the rain. Yeah, Sam would wear a hat a lot. And this, you know, partially was to sort of shut off the bright lights. And I said, is this something you want, you want to work on taking it off? And Sam was about to go interview for some work after she left the residence. And you know, she said, I want to be able to just wear my hat when I want to wear my hat, but I can't wear it to the interview. And so what we did is we practiced being in my office with the bright lights. She took her hat off. We did sort of a mock interview. And so that was, that was okay because she's saying, I want to work on that.

[D]

I also worked on it with coaches, like at the end of the hallway where it was dimmer lit. And like, that was harder because I didn't really know them.

[C]

Yeah.

[D]

And that was like, Jen didn't see my head for two and a half years. So. Yeah, forget what I was just going.

[B]

To say, but yeah, well, with Jen seeing your. Your head after two and a half years, must have been quite a big exposure for you.

[D]

Yeah, she's studying every square millimeter. And I'm like, you can go away from me. But yeah, no, I've written a poem about it.

[B]

Oh, wow.

[D]

It's a big deal.

[B]

Yeah, absolutely. And Sam, for you, did. Did Jen use like Suds, like the 010 or 0 to 100 on distress or did she change that up?

[D]

Yeah, I don't follow that. And I told her that straight out. I was like, this doesn't make sense to me. So like my famous last line, that just doesn't make sense. So I eventually created my own related to special interest, which would be different types of aircraft and feared outcomes. Like if this plane crashes, like this crime will occur. Like just going like, I might lose all my hair if this plane takes off on the wrong Runway. Like that whole thing. But sorry, I can't get out of my head that had the. I took off my hat on 7 27. And that's a plane. But anyway, yeah, Sam, I follows dates.

[C]

She will be able to tell you.

[D]

And it's not like obsessive. Well, and numbers. And you're like, enough with the numbers. And I'm like, no, thank you.

[B]

Um, oh, in, in England we would say 27 7, if that helps.

[D]

Ah, yes, that's true. That's wrong.

[C]

That doesn't make sense.

[D]

That doesn't make sense.

[B]

I disagree there. But yeah, we, we, yeah, we use preferred numbers also.

[D]

So like instead of 1 to 10, my number is 3. It's like my go to. So I did like 3 33, like 3 13, 23, 3340 and so on till like 103. And that helped make things more concrete for me and kind of actually helped with buy in to kind of like assess where I was at as opposed to being like one to a hundred. I don't know what that means. One to ten. Like that.

[C]

Yeah, yeah, it's. It's too abstract. It's not concrete enough. Right. Even for our non autistic clients. It's a very subjective way of describing our experiences. And if you think about can be really hard for the autistic client to even just describe what they're feeling inside. There's some interoceptive dysfunction that occurs. I don't know what anxiety feels like. I don't know when I'm hungry, I don't know when I'm thirsty. I can't tell when I need to use the restroom. So to ask somebody, okay, give me a number based on how you feel.

[D]

Is just because numbers are numbers, not feelings. And also, how am I supposed to Know if I'm hungry or have to.

[C]

Go to the bathroom.

[B]

Yeah.

[C]

So you can turn it into, you know, something that becomes fun for people. I mean, buy in for erp since ERP can be so challenging. It's. We, we want that, we need that. And so if you tap into the person's special interest. Interest and use that as a way to set up this, this rating scale. It becomes fun.

[B]

Yeah, exactly. It makes therapy much more interesting, especially.

[D]

When Jen's like, you can talk about true crime if you do this first. And I'm like, okay, fine. And then I get my five minutes of anything she doesn't really want to hear about and probably already knows, but doesn't matter.

[B]

So. So Jen knows a lot about JetBlue.

[D]

Oh, yes. She sends me her flight number so I can track them, but it's not because I'm worried she's going to die. That could happen, I don't know, but it's going to happen one day. That's with all certainty, but. Because then I like to tell her the tail number of the plane and where it's coming from and where, when it lands and if it's there and what gate she is at because she gets a little anxious at the airport.

[B]

Okay. Yeah, Nice. I like it. Do you have a member card for JetBlue or loyalty?

[D]

Oh, yes, yes.

[B]

Stupid question by me.

[D]

I have it for like, a few airlines. Yeah.

[B]

Oh, okay. Okay. Yes, you've mentioned already about kind of changing the pace, but is there anything else you want to say about that from both your perspectives?

[C]

Yeah, definitely. You know, when I'm setting up ERPs, I'm typically using an inhibitory learning model to set them up. And I'm, you know, trying to change up the different mediums that we want to introduce the fears through. When I'm working with an autistic client, I'm doing something pretty different. Predictability is very, very important for the autistic client. And things happening by surprise and all these different variables, all the things basically that we would do inhibitory learning to create the greatest efficacy. We're basically not doing that. We're setting up ERP to be autistic. Right. So we're introducing more predictability. And so I might say to a client, all right, we're going to go around the UK and we're going to touch doorknobs and I might even say which ones. And then we're going to go into the kitchen and we're going to touch the fridge handle and I'll sort of outline it, there's a map there so they sort of know what, what to expect. I might even just say, we're just going to work on doorknobs today and not adding too many variables. And so you see, we might just be working on a single symptom. We might just be working on things in a more stepwise fashion.

[D]

Right.

[C]

We're going to move up this hierarchy. I typically don't use hierarchies much anymore when working with bites who are not autistic.

[D]

They don't make sense, but they do sometimes. It depends.

[C]

So it's just creating a situation where they know what's coming next can be really, really helpful. Some of the other things that I'll do is instead of shooting for zero compulsions, which is something that we often do, you might say, all right, let's delay that compulsion. Can you delay doing it for an hour? Can you delay doing it for two hours? Again, not something that I regularly do with my non autistic clients, but it seems to go over well.

[D]

We've negotiated on numbers. You can do as many as this, and the next time we're going to do only as many as this. And then next time we're going to do even fewer and then all done sort of thing.

[C]

Yes.

[D]

And I was like, okay, I'm buying into that. Yeah, as long as it's like some multiple of three, then we can do it.

[B]

Yeah, I like that. Okay, nice. That's a good adaptation. Jen, was there anything else you wanted to add to that?

[C]

Yeah, one thing, just real quick, that's, that's also very important is that sometimes our autistic clients can't hang in for the whole hour to do the erp. So sometimes we're going to need to time block them and just do maybe 20 minutes, 30 minutes of the ERP and maybe you meet that person twice a week for 20 or 30 minutes instead of having people hang in that whole time. And I made the mistake of trying to do ERP for that full hour and then have people just say, you know What, I'm done 20 minutes in, because they've become sensory overloaded and then they disengage. So sometimes that, you know, sometimes we might actually extend the session, but sometimes we might have to decrease that session time as well. Extending the session would come up in such a way where, I don't know if you've ever worked with anybody where they're asking a lot, a lot of questions. Want to do a lot of psychoed prior to starting ERP or switching to A different symptom type. And at some point, you just have to go, all right, we got to just stop talking about it. Let's just go do it. When I'm working with an autistic client, I might spend more time explaining things, answering questions, because ERP has to make sense, and that's one of the things I've got to make sense. If it doesn't make sense, why you have. They're. They're doing what you're having them do, the buy in is. Is not very great.

[B]

Good point. And Sam, for you, uh, obviously there was therapy with Jen, pre ASD diagnosis.

[D]

And then, well, she knew by, like the first second she met me. She just didn't tell me for a while.

[B]

Okay, fair enough, fair enough. But it sounds like Jen's approach did change a bit, maybe once. Yeah, she's not in. What. What do you recollect, like, what it was like for you in the early days of doing ERP with Jen compared to, say, now, where it's maybe much more tailored to asd?

[D]

I think my voice feels more heard.

[B]

Okay.

[D]

But honestly, I've been pretty blunt with her, so I. It's the no filter. So I have expressed how I feel about many things.

[C]

Yeah, yeah. Sam's been very good at telling me what she needs or what we need to do differently. And, you know, I've been doing this a long time, so of course that sort of. You work with people who are non autistic and you have a certain way of doing things. Right. It was almost like I was the one who was being rigid, and I had to sort of go, wait a second, I got to step back here and look outside the box, because the things that Sam's talking about that I've been doing aren't working.

[B]

Yeah, good point. And. And yeah, I, you know, with my clients that are brutally honest, I do appreciate that because, you know, they're telling you the truth. Something's not working. You know about it. There's not. Eight weeks have gone by and you think it's working. And then they're like, well, it's not quite working. It's like, tell me eight weeks ago we could have changed it.

[D]

So, yeah, no, it's not happening. Let's change this now. But it also is. It's nice that I can come to be like, I came up with my own idea. Like, let's meet in the middle and see if we can do. I mean, I have enough knowledge and, like, progress that I can make a fair plan. And I'm not Like trying to like, go around you and you know, be like, this is too much for me because I'm trying to avoid something I'm genuinely like, not able to.

[B]

Yeah, yeah, yeah.

[C]

And that's where my brain would go is, oh, Sam's trying to avoid doing A, B and C. Right. But it wasn't bad at all.

[D]

I couldn't even get to A, like. So B and C were non existent.

[B]

Yeah, good point. Is there any. Do you need to update language at all on how words you use, wording you use, that sort of thing?

[C]

Yeah, definitely. You know, we're really trying to shift the conversation away from talking about autism from a medical model. You know, we're trying to shift away from talking about autistic traits as something that needs to be treated, as if there are symptoms and there's a cure. And so the language that we use becomes really, really important. So for example, we say autistic person or autistic client. We're not necessarily saying a client with autism.

[D]

Right.

[C]

Because it infers that it's something that needs to be treated, that we need to do ERP or some other treatment to try to make these tendencies and experiences go away. These are integral parts of people. And so, yeah, the language that, that we use becomes really important where we're veering away from saying things like, you know, someone is suffering from ASD because we're really not seeing it anymore as a disorder. It's more about having, you know, these sort of strengths and weaknesses, things that might be different and unique about you. For example, Sam and numbers and JetBlue and everything. Right. We're not going to try to make that number special interest go away. And so we have to try to figure out how to work within that. We have to get creative. Now, of course, if the behavior is interfering in someone's ability to know, be out in the world and yes, we might need to, to change things up, but we really want to start to see the autistic client as somebody with neurodiverse tendencies instead of. I, I don't know if you have seen this a lot where you live, sue, but in America, oftentimes you see the exploding brain and with the puzzle pieces.

[D]

Don't get me started on the puzzle pieces.

[C]

That's big over there, but for a while here that's. You'd see the exploding brain with the puzzle pieces as a bumper sticker on people's.

[D]

You still see it, you still see it.

[C]

But autistic individuals don't want to be this puzzle that we non Autistics have to solve.

[D]

Right.

[C]

It's not that at all. And so even with that, we're trying to sort of move away from seeing autistic people in a different way and not as a quote unquote disorder where we need to do treatment on their symptoms.

[D]

So, like not showing up as, hi, I'm Sam and I have autism. Like, Like I'm autistic. Cool. I'm not going to introduce myself that way. Yeah, I mean, some people might and that's okay too. But just kind of like caring, like identify, not identifying with it. That's the wrong word words. Hard, hard.

[C]

Part of who you.

[D]

It's just part of. Yeah, yeah.

[C]

And it's, it's different from, you know, we might say that, you know, I'm seeing Joe and Joe has OCD or Joe is suffering from ocd.

[D]

Right.

[C]

We use, at least in America, this person first language. But that's different when we're talking about the autistic client.

[B]

Yeah, I'm glad you said that. Yeah. Because we have ocd. Obviously I use with OCD because I want people to realize they're more than the ocd, but obviously with autism, it's completely different because I know I've said ASD a few times during this episode, that's just my clinical training, but yeah, I agree it's not a disorder. I know it's changed a bit to ASC condition, but it's not really a condition either. It's just who people are. It's another way of being. And it's is thrown in the same wording as you have autism, you have ocd, you have depression, and it's not a mental health diagnosis. So, yeah, I'm sure that will change in the, in the coming years, but definitely worth us talking about for sure.

[C]

For sure. Even like you hear people say, oh, you know, that person's high functioning, low.

[D]

I do not like functioning labels because sometimes in certain circumstances I could be high functioning and we can move to the next thing and I could very much struggle with it. So how do you just say someone is high functioning across the board, like all contexts? That doesn't work that way. Yes, good point.

[C]

You know, instead of using high functioning, low functioning, let's just talk about specific strengths and weaknesses that, that people.

[B]

Yeah, yeah, I agree, I agree. I think it's going to get a lot better over the next 20, 30 years, every year, but, you know, massive difference in the next 20 to 30 years. So. Yeah. So motivation and buy in. How do we, how do we really motivate. You, Sam.

[D]

I mean, if I'm feeling heard, that's a big thing. And also feeling like, like someone, like, not. I don't know what the word. Kind of like someone's cheering for you but like silently, as opposed to being like, you're doing this wrong and you're doing that wrong, because that will just crumble me to pieces. Yeah, I guess, like the structure of the way feedback is given can be helpful also to show me to explain. Look what you did. You live to tell. You did this really hard thing and it's like, oh, this connects to my life. Now that makes sense. And like, I can go outside in the rain even though at one point it was contaminated. And if it rained, I had to stay inside all day, according to my brain. But like, you can't just stay inside every time it rains. I would like to, but we can't.

[B]

True. Don't ever move to England.

[D]

I know. Oh, I know. I have my spots.

[B]

I can't go to Seattle. That rains a lot.

[D]

We'll be there next year.

[B]

Oh, yeah. For the conference. Yeah.

[C]

This motivation piece is so important. And this really isn't specific to working with an autistic client. Right. Even non autistic individuals there has to be buy in for ERP because it's just so, so challenging. And so I think the one thing that Sam was just sort of alluding to is that the ERPs have to make sense. And so, for example, say we're going to do a contamination exposure. And we say, all right, well, let's go to the mall. Like, malls are dirty and gross.

[D]

Like, I'm not going to the mall.

[C]

Sam says, I don't ever go to the mall. Like, why would I do an exposure at the mall? That makes no sense. And I've had other autistic clients tell me that as well. And so I'll say, all right, where do you go a lot? And someone once told me, oh, I love the arcade. I'm at the arcade all the time. I said, okay, let's go there and do ERP for contamination. Because that makes sense.

[D]

I've done it at the airport.

[C]

Yes, yes.

[B]

Nice.

[D]

Yeah.

[B]

So linking into, well, values, interests. So, yeah, I guess we say generally as erp, we talk about from an ACT lens, values based exposures. But here, Sam, we might say special interest based exposures.

[D]

If it's possible, JetBlue could be a value also.

[B]

No, of course. Yeah, yeah, yeah. True Travel travels about it.

[D]

Yeah, exactly.

[C]

Yeah.

[D]

And.

[C]

And we have to be very concrete about what doing this Treatment, like the ways in which it's going to help improve the quality of the life. You know, what will you able be able to deal if you're not ritualizing? And I, and I recognize that even that question in and of itself is very abstract and fraud. So I would use what they're struggling with. When you're not engaging in a shower that takes you an hour and a half, then say you take a 10 minute shower, what will you, when you step out, what will you go do? How will you spend your time?

[D]

It's funny because this morning I had like 25 minutes to just sit and like read the news after getting out of the shower. And I was like, I'm not in a rush, like, I'll get there when I get there. Which is very strange of me because I would have told her at an exact time that I was going to be here and if I was late.

[C]

I would not show up.

[D]

But I would because she would kill me if I didn't.

[B]

Good. Well, I'm glad you showed up.

[D]

I'm glad I showed up too.

[B]

Good, good, good. Well, I guess to both of you, words of hope for any autistic people listening.

[D]

I have to do thinking time so you can start.

[C]

I will start. Yes. There are lots and lots of clinicians out there who are doing this work already that, that was similar to what Sam and I have been doing. And it's just about finding that person that really, truly understands and is not rigid in the way that they're doing erp. How I sort of started out to be that those people are out there and more and more people are doing ERP in this particular way. It's being talked about, you know, nationally at conferences and whatnot. And I think people are buying in because changing up the way we do ERP with our artistic clients, it works. It really works. And it's so gratifying as a therapist to watch them change and grow and get their life back.

[D]

So I couldn't imagine light as a therapist. I'm not a therapist, but you as a therapist, like if you try the same thing and it's not working, how frustrating that would probably be. Yeah, like all day, every day. Say you had to see me six times a day, which you probably do anyway, but. Yeah. Are you done with your hopeful yeah statement? I guess I would say that I don't really want to use the word hope, but there is a place that can be safe and really encouraging to engage in treatment, especially when you're in this place that feels like nobody Understands you or won't listen to you. Like you said, more people are becoming aware of this works and I think that that is very important. And there will be people who are going to stick to their very rigid ways of doing which. To which I tend to have a script that I will say to Jen, I'm like, so I'm the. Or is it them? But honestly, like, I just think that there is a place that we can fit in and it's getting bigger.

[C]

Yeah, for sure.

[D]

And more inclusive and welcoming.

[B]

Yeah, absolutely. Awesome. Good words. So, okay, so I'll ask you separately. So Jen, you can pick up the phone and call the 20 year old you. What do you tell her?

[C]

Oh boy, that's a good one. I would tell the 20 year old Jen to hang in there, keep at it. You got this. I look back on, on that period of my life when we were in school or graduate school, like, ah, am I going to be able to do this? And being so unsure of myself and here I am and having just the best, most fulfilling career I could ever imagine. And it feels wonderful. And I would tell myself it's going to be okay.

[D]

That's reassurance.

[C]

I would reassure myself.

[B]

True. And then, Sam, if you could pick up the phone and call. I don't say that Covid version of you. The version of you that came into McLean at that time, like early 20s, basically.

[D]

Same.

[B]

Yeah. Okay, cool. I didn't want to presume your age.

[D]

It's okay. My students think I'm 82 years old, so it doesn't matter. I would be like, you're still here. This is very surprising because that was a very big downward turn, like graduating college. I don't know how I did that, by the way, but I did. And then kind of jumping into the world was like, oh my goodness. I realized how much is getting in the way of me interacting with the world. To which I then ripped all my hair. I went downhill really fast. So if I was to say something to myself, it'd probably be pretty blunt, like just keep moving and get up and stop complaining. Which sounds like really rude. But like I respond to that sometimes. But also just that, like, hi, it's older me, like, look how far you've come, sort of thing.

[B]

Yeah.

[D]

Also like I work with the population. It's just very. It's nice that every day my interactions with work are with people that I understand so differently than all the other staff.

[B]

Yeah, yeah. That must be quite sort of. I use the word healing. Healing for you in the sense you're you're, you're helping younger people. I don't know the age group, but I assume younger people who are maybe in positions similar to what you were or feeling misunderstood or.

[D]

Yeah, and it's showing that the OCD and the ASD I'll use just the letters for now, are so intertwined I can see it every single day.

[B]

Yeah, yeah, absolutely. Hey guys. So a quick interruption. This isn't part of the actual interview. This is me now speaking to you directly. So Sam emailed me after the podcast and said she would like me to add this bit in addition to our answer to the 20 year old self question. So I'll add it in here. So she writes, telling my 20 year old self that finally there is some answer that actually makes sense when it comes to all the situations etc. That confused me for so many years initially being labeled as NT and the challenges I've navigated through almost white knuckling, mostly people pleasing perfectionism. And that the answer may change your entire life if you just hang on a little longer and do the hard work while advocating as best you can for yourself. So there it is. I'm adding that bit in now. Back to the interview. Well, look, thank you so much to both of you for coming on. Like this has been amazing to get both your perspectives and it's also been wonderful to see your therapeutic alliance, relationship, whatever we want to call it.

[C]

Yeah, thanks for having us. It's such an important topic. So we really do appreciate you giving us the space and the time to talk about this and just thank you for everything.

[D]

Yeah, thank you. We've been talking about this for years, but we didn't, I guess, get to.

[C]

The point where we were really, really appreciate all you do for the community.

[B]

No, I appreciate it. Thank you so much for considering it.

[A]

Thank you for listening to this week's.

[B]

Podcast and thank you to our Patreons who helped make this episode possible. And if you would like to find out more about Patreon and the rewards and benefits, then there will be a link in the episode description.

[A]

If you enjoy the OCD Stories podcast and would like to support us, please subscribe and rate the show wherever you listen to the podcast. And thank you to NOCD for supporting our work. If you want to find out more about nocd, you can click the link in the episode description and quick disclaimer. Guys, this podcast is not therapy. It is not a replacement for therapy. Please seek treatment from a trained professional and until we speak, take care.

[B]

It.